Life as a Leach

That's what we hear from Abby all day long because the girl can't hear a thing!  We were hoping that this hearing loss was a result of a malfunctioning tube, but Dr. T. checked out her ears during her jaw surgery and everything was a-ok...except that her left ear now has a substantial hole in it that will need to be fixed when she is older. So since the hearing loss wasn't fluid related, we were anxious to hear what the audiology report was.  Abby had a hearing test yesterday and cooperated very well.  The audiologist was very good and worked hard to get all of the information she needed.  I feel confident that it was a valid report. Abby's right ear has always been worse, but this time her left  ear showed moderate to severe hearing loss and her right ear showed moderate.  Her left ear has never been anything but normal (her last test was in July), so Dr. T. thinks this hole is causing more problems than he thought.  Because of her age and the gro...

Our Ent just came to visit.  He said intubation was perfect doing it our special way.  Her right ear looked good, even though that was the one that multiple doctors thought was sideways.  The left ear has a sizable hole in it, which will probably need to be fixed in the future.  He's really not sure why she's having such hearing and speech issues, based on what he saw.  So...he will test her hearing in December and go from there.   He went back to check and see how the jaw was going.  She should be done fairly soon.

We're facing big decisions, folks. Ones that the doctors don't want to make for us because, as our ENT put it, "It's anyone's guess.  Don't believe any doctor who says he knows the right answer, because it's just not true." We met with the new jaw surgeon today at Hopkins.  He is extremely knowledgeable and has a lot of experience with jaw distractions , which is why they brought him on.  We were really impressed with him and the before and after pictures he showed us of his past patients. During the distraction, an L-shaped cut is made on both sides of the jaw and metal bars are put in.  The bars are attached to external screws that go behind the ear, which we will turn for 14 days.  The external screws will be removed after that, but the bars will stay in her jaw for several months.  Because of Abby's airway issues and the swelling around her face due to the surgery, she will be intubated and sedated for about 5 days before they attempt to ex...

Since Abby's tubes were put in her ears January 15th, she has continued to have a lot of ear issues.  Her ears began bleeding again well after they had stopped post-op, so our ENT put her back on Ciprodex.  (If you are looking for a good stock purchase, Ciprodex might be it.  I think Abby is responsible for most of its financial success.)  The nurse practitioner said to call if she wasn't better in a week, and she would see her when we were coming up for Abby's feeding evaluation on Thursday. Welp, they were no better, despite pouring Ciprodex into her ears twice a day.  In fact, her right one was definitely worse.  So I called ENT on Wednesday to make an appointment for Thursday afternoon.  Dr. T. wouldn't be able to see her because he was in surgery all day, but the NP could.  We went straight there from the feeding clinic at MWPH (a 10 minute drive with an extra 20 minutes of driving through the parking garage trying to find a space!!!) ...